• 7 Posts
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Joined 11 months ago
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Cake day: August 8th, 2023

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  • It doesn’t cost that much because the company are making a hefty profit, of course. And much more profit off it in the US as per usual, the NHS pays considerably less

    The deal struck [in 2021] with Novartis Gene Therapies, secures the drug for NHS patients in England at a substantial confidential discount and paves the way for the National Institute for Health and Care Excellence (NICE) to publish draft guidance recommending treatment with Zolgensma.

    The terms of the deal mean that some young children that currently fall outside the NICE recommendation criteria will also be eligible to be considered for treatment by a national multidisciplinary clinical team (MDT) made up of the country’s leading experts in the treatment of SMA.

    This means as many as 80 babies and young children could potentially benefit from the life-changing gene therapy a year.

    But profiteering aside, the number in the final paragraph is your answer. Up to 80 kids in the UK per year, so up to ~400 in the US, ~500 for the EU. It’s not a big market but the cost of drug development doesn’t get cheaper just because the number of cases is small, it gets more difficult and more costly. And there’s more than one drug company chasing the market.

    None of that is a defence of Pharma. But it is inevitable under capitalism. Eat the rich etc etc.





  • JoBo@feddit.ukOPtoTechnology@lemmy.worldOn Being an Outlier
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    3 months ago

    The way he plays with the meaning of words

    She (or, if you’re not sure, they).

    any kind of bureaucratic or rule-based decision-making

    Human-written rules are often flawed, and for similar reasons (the sole human thought process that ‘AI’ is very good at reproducing is system justification). But human-written rules can be written down and they can be interrogated. But Apple landed itself in court because it had no clue how its credit algorithm worked and could not conceive how it could possibly be sexist if the machine didn’t get any gender data to analyse.

    Perhaps that is the point.

    That is, indeed, the point.




  • JoBo@feddit.ukOPtoTechnology@lemmy.worldOn Being an Outlier
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    3 months ago

    The data cannot be understood. These models are too large for that.

    Apple says it doesn’t understand why its credit card gives lower credit limits to women that men even if they have the same (or better) credit scores, because they don’t use sex as a datapoint. But it’s freaking obvious why, if you have a basic grasp of the social sciences and humanities. Women were not given the legal right to their own bank accounts until the 1970s. After that, banks could be forced to grant them bank accounts but not to extend the same amount of credit. Women earn and spend in ways that are different, on average, to men. So the algorithm does not need to be told that the applicant is a woman, it just identifies them as the sort of person who earns and spends like the class of people with historically lower credit limits.

    Apple’s ‘sexist’ credit card investigated by US regulator

    Garbage in, garbage out. Society has been garbage for marginalised groups since forever and there’s no way to take that out of the data. Especially not big data. You can try but you just end up playing whackamole with new sources of bias, many of which cannot be measured well, if at all.




  • JoBo@feddit.ukOPtoTechnology@lemmy.worldOn Being an Outlier
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    3 months ago

    Where did you get insurance carriers from?

    No idea what your post, before or after edit, is trying to say. But the subject of your quoted sentence is “proponents of AI” not “AI”, and the sentence is about what is enabled by AI systems. Your attempt at pedantry makes no sense.

    If you’re suggesting that it is possible to build an AI with none of the biases embedded in the world it learns from, you might want to read that article again because the (obvious) rebuttal is right there.


  • JoBo@feddit.ukOPtoTechnology@lemmy.worldOn Being an Outlier
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    3 months ago

    Isn’t that a continuation of “why the outlier was culled”?

    Not sure I follow, but I think the answer is “no”.

    If you control for all the causes of a difference, the difference will disappear. Which is fine if you’re looking for causal factors which are not already known to be causal factors, but no good at all if you’re trying to establish whether or not a difference exists.

    It’s really quite difficult to ask a coherent question with real-world data from the messy, complicated reality of human beings.

    A simple example:

    Women are more likely to die from complications after a coronary artery bypass.

    But if you include body surface area (a measure of body size) in your model, the difference between men and women disappears.

    And if you go the whole hog and measure vein size, the importance of body size disappears too.

    And, while we can never do an RCT to prove it, it makes perfect sense that smaller veins would increase the risk for a surgery which involves operating on blood vessels.

    None of that means women do not, in fact, have a higher risk of dying after coronary artery bypass surgery. Collect all the data which has ever existed and women will still be more likely to die from the surgery. We have explained the phenomenon and found what is very likely to be the direct cause of higher mortality. Being a woman just makes you more likely to have that risk factor.

    It is rare that the answer is as neat and simple as this. It is very easy to ask a different question from the one you thought you were asking (or pretend to be answering one question when you answered another).

    You can’t just throw masses of data into a pot and expect sensible answers to come out. This is the key difference between statisticians and data scientists. And, not to throw shade on data scientists, they often end up explaining to the world that oestrogen makes people more likely to die from complications of coronary artery bypass surgery.